Aug 4, 2010

Caregiving: You Don’t Understand

By Barbara Pursley
Alzheimer's Reading Room

People are constantly telling me “Don’t forget, you have a life of your own even though your mom has Alzheimer’s.”

That advice tends to frustrate me, push my buttons and I want to tell them, “You don’t understand.”

It’s really that simple because people that don’t walk in my shoes can only “think” they know what it’s like. When you love someone as much as I love my mom and when you are a highly sensitive person like myself then everyday is a challenge to live a life of my own.

Living life with a terminally ill person keeps you in a vulnerable position. You are never free of their needs. I haven’t been capable of putting my heart into anything since the first day Mom was diagnosed. My life became “our life” since that date. Mom became my priority. A priority that takes emotional and physical energy and leaves me scattered and unavailable to focus on my personal life.

The essence of my being is constantly changing from happy to sad, from mental order to disorder, from freedom to chaos, from physical energy to fatigue, from hope to hopelessness, from my life to her life to our life.

I know people mean well when they say, “Don’t forget you have to have a life of your own, aside from your mom, but maybe what I’d prefer to hear is
“I know how difficult it must be caring for your mom and meeting your own needs too, so if there is anything I can do to lessen your burden, please let me know.”

Barbara Pursley was born in Galveston, Texas and is the author of EMBRACING THE MOMENT. Barabara attended Santa Monica College, studied photography, and worked as a commercial photographer before returning to Texas to care for her mother. Barbara also taught journal writing to women in Texas rehabilitation facilities. She put her God inspired journal entries and photographs into book form in 2009.

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Original content Barbara Pursley, the Alzheimer's Reading Room